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CheckOrphan NewsFlash, March 2,…
3/02/2010
CheckOrphan NewsFlash for Tuesday, March 2, 2010: breaking news about rare diseases, orphan diseases, orphan drugs, and…
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CheckOrphan NewsFlash January 15,…
1/15/2010
CheckOrphan NewsFlash for Friday, January 15, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
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CheckOrphan NewsFlash January 11,…
1/11/2010
CheckOrphan NewsFlash for Monday, January 11, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
NewsFlash
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Brain, Blood, and Iron: Advances…
13–14 March, 2010
The overall objectives of this workshop are to: (1) define NA and NBIA…
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Diamond Blackfan Anemia…
13–15 March, 2010
This conference is expected to generate immediate and long-term…
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Interdisciplinary Training…
15–16 March, 2010
The goal of this meeting is to mentor the career development of a “…
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ICORD 2010: Sixth International…
18–20 March, 2010
The VI International Conference on Rare Diseases and Orphan Drugs (ICORD…
Events
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Wantage Man Battles Against a Chronic Disease Which Is Under the Spotlight in a New Harrison Ford Film
Thursday, March 4, 2010
A Wantage man has spoken of his battle with a rare muscle-wasting condition as a new film hits cinemas highlighting the diseasePeter Constable, 51, of Blackcroft, Wantage, was diagnosed with Pompe disease a decade agoHe has difficulty even standing up because of the rare metabolic muscle disorder
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Kinmel Bay Woman's 50 Year Battle With Disease
Thursday, March 4, 2010
For almost fifty years a Kinmel Bay woman’s life has been blighted by a hidden diseaseDuring a routine tonsil operation, Wendy Smith, 55, contracted a rare blood disorder and she is still suffering the repercussions todayHenoch–Schönlein purpura (HSP) affects 15 people in every m
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Mount Everest Climb Will Aid Ill Cumberland County Teen
Thursday, March 4, 2010
Myles Clapsadl of Monroe Township, Cumberland County, has spent nearly all of his 17 years battling a degenerative brain diseaseIt makes walking, talking and even swallowing difficult for the Cumberland Valley High School senior. Yet Myles fights back with determination, undergoing regular drug an
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Lena's Heroes Are Star Trekkers
Wednesday, March 3, 2010
A group of men and boys from Macduff and Turriff are set to tackle a 65-mile walk, inspired by a young girl with a rare genetic diseaseThey aim to raise funds for the Cystinosis Foundation UK when they set off on a four-day hike along the Speyside Way on April 4The charity is led by the father of
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Operation Might Allow Boy to Walk
Wednesday, March 3, 2010
Cole Wooten stands on his knees, bobbing his head and bouncing to the beat of hip hop music inside an Augusta dance studioThe 11-year-old is taking part in his weekly dance class at Center Stage Dance Academy. His fellow dancers are moving to the same beat, except they're on their feet"One day th
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Community Rallies to Help Teen With Rare Bone Condition
Wednesday, March 3, 2010
OTTAWA COUNTY, Mich. -- An Ottawa County community has come together to help one of their own get strongerTim Bosch of Zeeland has struggled with a rare disease all of his life, but now a new pool could help him overcome it all“He had twelve fractures at birth,” said Deb Bosch, Tim's
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New Lease of Life for Baby Oliver
Tuesday, March 2, 2010
A 15-month-old baby from Salisbury is recovering at home after a bone marrow transplant at Great Ormond Street Hospital (GOSH) cured him of a rare genetic disorderOliver Finley was six weeks old when he was diagnosed with leukocyte adhesion deficiency type one, a disorder that affected his white b
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Little Gem Millie Inspires Dock Run
Tuesday, March 2, 2010
Little Millie Lonergan cannot enjoy chocolate or crisps like other children and most of her food comes from the chemistBut the bubbly three-year-old is always smiling and was the inspiration behind a charity eventPreston North End Players, families and even pets turned out in force at a five-mile
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Gresham Teen With Rare Disease Wins a Minor Escape From Nursing Home
Tuesday, March 2, 2010
Every three months a bit of James Wilson Coleman diesA rare genetic disease ravages his body and brainThe boy who once played baseball has spent the past three years in a Gresham nursing home. At 16, he is by far the youngest resident"Time's precious," his mother, Theresa Coleman, said this afte
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National Rare Disease Day
Tuesday, March 2, 2010
James Sanders will be taking six of these pills and three of these pills everyday for the rest of his lifeHe suffers from hypoparathyroidism. It's one of 7,000 rare diseases. James was born with his"They ran some tests on me and fortunately ran a calcium blood test and the levels came out so low
